眼见为实:隐形加剧了罕见疾病患者的不平等

Darcy Richards
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引用次数: 0

摘要

专家们讨论了罕见疾病的不可见性如何成为减少不平等的障碍。会议由法国孤儿医院和法国医学研究中心(Inserm)的Ana Rath主持,会议参考了联合国关于罕见病(PLWRD) 2021年的决议1和联合国可持续发展目标(SDG),深入了解了罕见病患者面临的不平等、不公平和不公正。该小组还强调了我们如何在地方、区域、国家和全球各级采取行动,关注罕见病,影响变革,并开始缩小不平等差距。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Seeing Is Believing: Invisibility Exacerbates Inequality for Patients Living with Rare Disease
experts discussed how invisibility in rare disease acts as a roadblock to reducing inequalities. The session, chaired by Ana Rath, Orphanet, French and Medical Research (Inserm), France, provided insight into the inequalities, inequities, and injustice that people living with rare disease (PLWRD) face, referencing the United Nations (UN) Resolution on PLWRD 2021 1 and the UN Sustainable Development Goals (SDG). 2 The panel also highlighted how we can act at the local, regional, national, and global levels to bring rare diseases into focus, affect change, and start to bridge the inequality gaps.
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